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Topic: Anyone regret going flat?

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Aug 23, 2019 07:03AM

StAuggie wrote:

I'm finishing up chemo next month and will have to make a final decision about whether or not to do reconstruction. I'm planning on having both breasts removed. I do not want implants, so I'm choosing between going flat or DIEP fat grafting.

A few weeks ago, I was just fed up with the whole multiple surgery, lengthy recovery idea and just wanted to put cancer behind me, so I decided to just go flat. My concern is how I am going to feel later. I realize that no one can tell me how I'm going to feel about having no breasts, but I don't want to make the decision to go flat and then regret it later; from what I've read, its better to start reconstruction right away or at least leave skin, if they're able to, and then have it later.

If I go flat, I would probably wear some type of prosthetic to give the appearance of having breasts, at least in public. Not sure that I want to mess with the hassle of prosthetics, but in all honesty I don't think I can be comfortable without them in public. I just keep going in circles and haven't been able to come to terms with either option.

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/8/2019 AC + T (Taxol) Surgery 10/28/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 23, 2019 11:56AM Dharmamum wrote:

Hi StAuggie,

I just had a double mastectomy and have opted to go flat. When I was originally diagnosed with IDC I had opted for reconstruction since they offer it here in Vancouver BC on the same day. I didn’t have enough fat to make anything more than 2 a-cups, so I didn’t see the point of that. So I was going to have implants. Then a friend of mine sent me a link about a class action suit against 2 silicon implant companies as their implants can cause a lymphatic cancer that has never before been seen in breasts. I started digging some more and found a very comprehensive article about ‘breast implant illness’ which discussed the flaws in the research which the FDA used to approve silicon implants. It also highlights the link between breast implants and auto-immune disorders. At this stage it is hard to know how big the risks are, but as someone who already has multiple health challenges. (ME/CFS), I felt I had to put my health first.

I know in my heart that I have made the right decision but I am finding that emotionally, I don’t like the way my chest looks. I thought I might get some tattoos on my chest, but then remembered my dermographism will make that impossible.

I will get prostheses, but will probably mostly wear a sports bra with some light foam inserts I bought from Amazon. I am 53, married to a very supportive man and a buddhist which are things which have supported my decision. I know I still have some grieving to do and living in a culture that prioritises women’s external beauty will make my journey more challenging, but I will get there.

Having just been through surgery, and having met someone who had had a Diep flap, I am not sure I would have chosen that option as the recovery time is longer. But if I were young and healthy and had enough tummy fat, I probably would have. It is still an option for me in the future, if I gain weight, though I doubt I will take it.

I am not sure the skin is an issue with the Diep flap as I think they take the skin and tissue from your stomach, but check that out.

The one thing you might want to try and see is what do DIEP-flap breasts actually look like. Strangely, the plastic surgeon I saw had no photographs of any reconstruction. There are a few on the internet, but mostly gross ones during the operation, which are enough to put anyone off

Good luck with your decision.

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Aug 23, 2019 12:38PM StAuggie wrote:

Thank you for sharing your thoughts, Dharmamum. I have looked at the pictures online, and it doesn't help me come to a conclusion either way. I am horrified, I think, at what I know is going to happen to my body regardless of which path I choose. I have been in mourning, knowing that i am losing something that fed and nurtured my children. My husband is supportive of me, and whatever happens.

I was originally going to get implants, but I wasn't totally at peace with it. I decided against it when I did research and found out about breast implant illness. I don't want to have anything to do with them.

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/8/2019 AC + T (Taxol) Surgery 10/28/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 23, 2019 12:59PM buttonsmachine wrote:

Stauggie, my one piece of advice is this: don't to anything permanent until you're at peace with your decision.

In a practical sense, if you are considering DIEP it's sometimes important to keep your existing breast skin. You'll have a better cosmetic result, but it's also vital that your PS has enough skin to work with. In my case, my belly skin is not enough to reconstruct the contour of a breast, and so I'm not a candidate for DIEP at all, and I'm half flat now. Anyway, you should definitely meet with a plastic surgeon who does DIEP reconstruction and ask about your specific situation.

Best wishes for your decision.


Diagnosed at age 32. Multiple recurrences to chest wall and axilla since then. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2-
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Aug 23, 2019 01:07PM buttonsmachine wrote:

As an aside, I am not trying to be a bummer or to influence you, but this was just my experience: I personally find prosthetics to be very uncomfortable and unwieldy, but I make the best of it. However, I also found an implant to be uncomfortable. But being flat can also be uncomfortable - I've had phantom nipple pain, nerve regrowth pain, shoulder instability, and other troubles. Not to mention the emotional impact of losing a breast - I'm still really sad about it.

I am only speaking for myself, but I found that the lumpectomy was less painful physically and emotionally. However, that's not always a viable option, and sometimes this disease forces us to make tough choices. I hope you find a solution that you feel good about.

Diagnosed at age 32. Multiple recurrences to chest wall and axilla since then. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2-
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Aug 23, 2019 01:16PM wrenn wrote:

I have no regrets and in fact often feel relieved that I chose to go flat. I love not having to put on a bra to answer my door. I like that I don't have to hide my breasts or be uncomfortable when having ECG or other shirtless things.

In the beginning I got prosthetics thinking people would feel uncomfortable seeing my flat chest. I wore them to my daughter's wedding and a couple of other times just for the heck of it. But i haven't bothered with them since. Not that they were uncomfortable but I just never think to wear them.

I didn't want to go through more surgery but I also didn't think I needed breasts for any reason now that I am not breast feeding.

I agree that it is an individual decision though and not easy to make. I hope you make peace with your choice.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Aug 24, 2019 07:53AM Wildplaces wrote:

I am flat and 52. I initially had a one sided mastectomy by choice - well apart from the diagnosis of BC - and the other side done 2 years later. Reconstruction was offered and I work in the area so could have had pretty much what I wanted, but it was not for me. I am not thrilled with loosing my breasts - they were lovely to be honest, but in the scheme of treatment this was the easy bit for me. In the last two months ( so three years down) I am comfortable enough to skip the padded sports bras I used to wear - I wear stripes, vests etc and use a change room at the pool.

Although scars from mastectomies are significant - for me the whole focus was about getting as healthy as I could - the breasts if you wish became irrelevant. There are many many times/days where I forget I dont have them.

Wishing you well whatever you decide.



Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/21/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Aug 24, 2019 09:22AM Trishyla wrote:

I'll give a different perspective. I had a BMX (no choice - too much cancer for a lumpectomy) with immediate DIEP flap reconstruction. It was a long surgery, almost twelve hours, and a tough recovery. That's the downside. The upside is that I awoke from my mastectomy with breasts. Warm, natural tissue breast. I never for one moment felt mutilated. That was one of my biggest fears. I felt different, but not mutilated. I've had two further surgeries, both outpatient, to lift the breasts, construct nipples and to correct the abdominal scar.

It's been a long, tough road. But I would do it again in a heartbeat. If I can't have my natural breasts, then this is the next best thing. I'm very pleased with the final results.

My advice would be to check out the living flat threads and also the DIEP flap recon 2018 thread. Lots of great info and support.

Best wishes for an outcome that works for you.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
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Aug 24, 2019 03:14PM Erica wrote:

I'll offer yet another perspective. I chose not to have reconstruction when I needed a bilateral mastectomy (cancer in each breast). I asked my surgeon to make the result as cosmetically-pleasing as possible -- NO extra skin, no lumps, or dog ears, just a smooth flat chest. She did a beautiful job. I have two symmetrical incisions that are now virtually invisible. I never felt mutilated for one minute.

While extra skin can be helpful if you know you want reconstruction later on, it's almost never necessary. I've seen pictures of many flap surgeries (like DIEP) performed on women who had no skin left behind after their mastectomy. I made a point of asking my surgeon not to leave extra skin because I felt that would make my chest look unsightly and I knew I would feel unhappy about that.

We're all so individual, so the best advice I can give is to think about what matters to you. I felt that I would be happier with a smooth but flat chest, rather than have implants that weren't symmetrical. And I didn't want the extra scarring and invasiveness that a tissue flap surgery would entail. But other women, like Trishyla, feel very differently. I also wanted the shortest, easiest surgery possible, with the least time under anesthesia. For others, having reconstructed breasts makes longer or multiple surgeries worthwhile.

If you decide to try going flat, you can almost always have delayed reconstruction if you change your mind. Best of luck, whatever you decide.

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree
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Aug 24, 2019 03:56PM - edited Aug 24, 2019 03:58PM by mightlybird01

Thank you everyone for your perspectives. This is a huge help in deciding what I want and don't want. I have a question for Erica. How long did recovery take after bilateral mastectomy without any reconstruction? Also, I am wondering how is the feeling? Are there large areas of numbness? Is there tightness from the scar in the chest?

I am strongly leaning towards not having any type of reconstruction for my unilateral mastectomy. I would like to go as quickly and painlessly back to my active lifestyle which involves a lot of upper body work on my hobby farm caring for horses and other animals. I don't exercise in the gym, but do a lot of pushing, shuffling horse manure, brooming and lifting hay bales and water buckets, these sorts of things. I would like to know A) for how long will I need to arrange for a replacement after surgery for me on my farm (it will be my right breast and I am strongly right handed), and B) will all these activities likely be possibly without much restriction in the long run (after healing has been completed)?



Dx 4/12/2019, IDC/IDC: Medullary, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Chemotherapy 5/21/2019 AC + T (Taxol) Surgery 11/7/2019 Mastectomy: Right
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Aug 24, 2019 04:39PM Maggie3923 wrote:

The conclusion to this story is, no, I have never regretted being flat. I felt like I had escaped prison when I had my second set of implants removed.

Over thirty years ago, I was a post doctoral fellow doing molecular research. My mother, two sisters, and a brother all got cancer within one year. I was the one trying to help everyone, long-distance, with their care. I had one baby at the time. My primary care doc set me up with a surgeon and an oncologist and every time I had a mammogram, I was in for a biopsy. They recommended a BMX. I waited until I had my second child. The plastic surgeons were so sure they had everything figured out, so I went along with reconstruction - expanders, surgery, encapsulation, surgery, one breast much larger than the other, surgery and flat. I became expert in the type of anesthesia I needed. I had my surgeries every Thanksgiving and Christmas because I was teaching and running a lab.

In retrospect, I think the implants didn't work, in part, because they put the prosthetics under the muscle and I had little kids, was swimming and biking, and the just kept inflaming my chest muscles.

Now, three decades later, I have a closet full of prosthetics. I'd love to donate most of them somewhere. Several years ago, I found the ones that are microfiber on the surface that touches you and feel like they have very tiny particles, like sand, inside. They are light, cool, comfortable, and have never leaked or broken. You might want to keep a silicone set for swimming, but my suits were fine without solid prosthetics in them.

With the older prosthetics, they would often leak or get bubbles in them. That further convinced me I had made a great decision. If companies can't make breast prosthetics that survive outside the body, how can they possible make ones that we can trust to survive inside us?

When you are flat - if you want to be a B this year and a D in two years, do it. I only miss having cleavage (which I really never had) when I see the Oscars. I feel that if your significant other is bothered by your not having breasts, maybe he or she doesn't see the real you. After all this time, I almost don't give a thought to the prosthetics. I am really happy with these microfiber/silicone ones and now have 3 good pairs, lots of nice underwire bras, and I think I'm pretty cute for an old dame!

After all this time, I finally figured out the gene that was in our family. I tried to talk to my 2 nieces about not having reconstruction, but neither took it seriously. "I don't have cancer anymore." "Please, you have to be a warrior in dealing with this, I said." I don't want to scare anyone here, but one is gone and the other is in remission for 6 months. When I identified the gene last summer (I don't have it), I had to call all my family and relatives I didn't even know. I don't know too many that decided to be tested, sadly.

It's not the end of the world to have one of these mutations - we have many survivors in my family - but you have to eat well, stay away from things that cause double strand breaks (DuPont factories, radioactive waste sites, smoking, etc), and you have to de-stress as much as possible. This seems like good advice for us all. One sister who didn't have the gene got cancer - but she is so vigilant it was stage 1.

When my second niece was diagnosed, I got in touch with my former oncologist. He said that, if he sees someone who is a survivor and, after some years has a relapse, it is typically after some major stress - including surgery (like reconstruction), car accidents, loss, etc. These things induce inflammation and cell division, so that may be part of the issue. The people in my family who have been long-term survivors are extremely calm most of the time!

Be healthy and happy and don't stress over things. I am thrilled to be flat. I've lived to help many people through cancer and I am optimistic that each of you can beat this. Much love to you all.

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Aug 24, 2019 10:08PM - edited Aug 24, 2019 10:18PM by LindaWhit

Hi, I just found this thread. Just had my mastectomy - right breast 8/22. I'm doing very well post surgery. 3 days. 😊 I fond all posts interesting. With the unilateral mastectomy , what are some problems I will face getting a prostheses to match/ look similar to my existing breast Thank

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Aug 24, 2019 10:40PM Moderators wrote:

Welcome, MightlyBird01, Maggie3923, and LindaWhit! We're glad you've joined here, and hope this community provides support!

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Aug 24, 2019 11:16PM - edited Sep 2, 2019 09:51PM by WC3

If I were at a different point in my life, I might have gone flat but I'm still in my 30s and felt like I would be ruining future relationship prospects if I went flat. I was going to do DIEP but did not have enough abdominal fat. The available alternative is bilateral SGAP but that is a big one or two surgeries depending on where I have it and I am not yet prepared for that as my CBCs are still low and I don't have someone who will be available to help me during recovery. I currently have implants as place holders.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 24, 2019 11:43PM carmstr835 wrote:

I also had cancer in both breasts and opted to go flat. I did want immediate reconstruction with DIEP but it wasn't possible, I needed radiation the cancer was in my lymph nodes as well.My breast surgeon also made my mastectomies as pleasing and flat and smooth as he could and he did a wonderful job.. I did not look deformed, but I did cry when I first saw them. I was a DD-DDD cup. I stayed flat for about 1 1/2 years, then opted for a delayed diep. I didn't like the prosthetics, they were heavy and hurt my chest. Also they didn't look real to me even in a bra. It was a rather traumatic experience for me to be fitted for them and several times I walked out before completing the order. I opted for delayed DIEP after I was called "sir" a few times, I had never been mistaken for a man before and that bothered me a lot. I have had 2 surgeries so far and will need 1 more to complete the DIEP. So, I had a bilateral mastectomy, DIEP, 2 revisions, and then the tattoo procedure. I am still not symmetrical yet, hopefully my next surgery will accomplish that, next month.

Dx 3/1/2017, DCIS/IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy 3/22/2017 Arimidex (anastrozole) Surgery 3/27/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 5/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/27/2017 Perjeta (pertuzumab) Targeted Therapy 6/27/2017 Herceptin (trastuzumab) Chemotherapy 6/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 9/11/2017 Breast, Lymph nodes, Chest wall Surgery 7/10/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 10/16/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 9/18/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Targeted Therapy Nerlynx
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Aug 25, 2019 03:56AM SuC wrote:

Flat for 5 years now, no regrets at all. I don't own prosthetics - never bothered. Exercise is easy - no bounce! I have a great tattoo (of a dragonfly) as I felt my chest looked too blank and featureless. You;ld not face the thought of the recon surgery - it all seemed so brutal, time consuming and the risks of complications was too high. Plus it isn't really reconstruction - they are not breasts but mounds of silicon or flaps from elsewhere on your body. I do not think I ever could have accepted them as part of me and , as such, they would not have been parts of my body that I would find sexual. My husband still finds me sexy. I can wear clothes that I couldn't in the past like halter necks.

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Aug 25, 2019 06:05AM Sal462 wrote:

Joined a few days ago to try to figure out Tamoxifen decision but happened on your post. The whole stress relation makes me nervous because I live very stressed life and it got even more stressed in next months after lumpectomy and radiation ( had been saying to people if THAT part was all breast cancer was, no one would worry about it. Knew it couldn’t be that easy and of course it’s not, now I have to decide between five years of worrying about blood clots and stroke or a life of worrying about recurrence being my fault). Really have to find a way to destress

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Aug 25, 2019 08:20AM - edited Aug 25, 2019 08:26AM by Erica

Hi mightybird,

To answer your question about recovery from mastectomy, the surgery was surprisingly easy -- very little pain. Really, the most painful aspect was the drains, which were annoying but the discomfort was minor. In my case, the drains were removed after less than a week, though in some instances they need to stay in longer, to prevent fluid from accumulating at the surgery site. Some surgeons have their patients wear binders, but mine didn't. Actually, it's hard for me to imagine wearing anything binding around my chest after surgery, as the area was definitely tender at first.

It was hard to sleep in a bed for the first few days -- lying on a flat mattress and getting up from a flat position was difficult, so I slept in an easy chair during that time. By the 11th day, I was able to go to a birthday celebration for a friend. Honestly, I would say I felt good after two weeks, normal after a month, and ready to be fitted for breast forms after six weeks. Starting about a week after surgery, I experienced sensitivity on my chest, which lasted for several weeks and then totally abated. The best guess for that type of sensitivity is that nerves that were cut during surgery were coming back to life and regenerating. I have regained most of the feeling in my chest, with almost no numbness. Unfortunately, I've lost the sexual pleasure that came from nipple stimulation, but that would have happened with reconstruction as well.

I don't have any tightness nor any movement restriction whatsoever. Starting very shortly after surgery, I went to a physical therapist who specialized in working with breast cancer patients. Using very gentle myofascial release techniques, she made sure that any adhesions that might have restricted my movement were released and that my full range of motion was restored. I highly recommend PT (if you can find a good therapist) to anyone who has breast cancer surgery and/or radiation.

Hi WC3,

I'm sorry you're going through this in your 30s. I was 57 at the time of my bilateral mastectomy and did think that if I'd been much younger, I might have opted for reconstruction. I was also married (still am) and my husband was extremely supportive of my decision not to reconstruct. In fact, he preferred that I not go through with reconstruction, although he understood that it was my decision to make.

I hope you figure out a good way to have successful permanent reconstruction, either with the implants you have now or with an LGAP, but if not, don't despair. My mother-in-law, who had a mastectomy at age 31, in an era when reconstruction wasn't available, met and married a handsome, brilliant, wonderful man (after my father-in-law died), who didn't care at all that she was flat. So, I know such men are out there!

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree
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Aug 25, 2019 09:56AM StAuggie wrote:

Maggie, where did you get the prosthetics that you like so much, with the microfiber and fine particle filler? Brand name? I'd like to research those and see if I'd like them.

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/8/2019 AC + T (Taxol) Surgery 10/28/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 25, 2019 10:22AM farmerlucy wrote:

I'm seven years out from implant surgery. I was on the fence about it but my family pushed for it. It has been fine. Recovery was slower because I was limited in what I could do. Normally I'm very active with our own little hobby farm. That inactivity coupled with all the cancer crap threw me into a major depression. The recovery from that was harder than any surgery.

This many years out I have scarring and some deforming of the implants. I do a lot of upper body work and that has never been an issue. I'm 59 now. I imagine if they ever need to come out I'll leave them out. The really good thing about them is that my prosthesis is always in place. They get freezing cold in the winter and that is uncomfortable. I'm not at all concerned about any secondary cancer caused by having implants.

I know you are not considering implants but I just wanted to convey that the inactivity caused by additional surgery should be something you take into account. It can take a toll emotionally.Best wishes.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Aug 25, 2019 10:23AM Karma_76 wrote:

I am 42 and just had a double mastectomy without reconstruction done in May. I decided against reconstruction as I personally feel that I would have a better chance of discovering a possible recurrence with a flat chest, plus I honestly did not think it would matter much to me personally. I also don't have much body fat to take from and did not want anything artificial. The surgery itself was a breeze; it got done on a Thursday, I stayed over night, the drains came out on a Tuesday and I went for my first 5 mile run two days after. Drains were the worst part. I am not regretting anything but am wearing prosthetics most of the time as I find that a lot of my cloths don't fit right without. At home and when working out I often go flat. I am getting my prosthetics from a lady that basically makes them custom from home, for about $40 per pair. They are filled with beads and I can squeeze them into most of my sports bras that I already had. If anyone is interested, here is the link. She also shares how to make them yourself which I might try in future......I wash them by just leaving them in one of the bras. If you google 'mastectomysolutions' you should be able to find her page.

Dx 2019: IDC stage IA, 0/3 nodes
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Aug 25, 2019 10:50AM gramcracker1 wrote:

I am a bilateral mastectomy I never regretted going flat my life means more to me than breasts I wear prosthetics in my bra and I can go any size lol but than again its a personal preference

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Aug 25, 2019 10:52AM - edited Aug 25, 2019 10:52AM by mustlovepoodles

So, I went flat after my BMX. I had a one-step reconstruction called Goldilock reconstruction which uses your own skin and fat to form little mounds. In my case, VERY little mounds, which got necrotic and left me with gaping wounds that required 16 weeks recovery, 8 of those weeks with a wound vac! Needless to say, I was thoroughly SICK of the whole business by the time I finally got healed. I wasn't able to wear prosthetics for about 7 months, so I wore large flowy blouses and lots of scarves. Honestly, I think people were more distracted by my bald head than my flat chest.

I thought I was okay being flat. I really did. I knew I would never have implants, especially after all the healing fiasco. I didn't want any foreign body left in me. But about 18 months after the BMX I began to realize that I was very unhappy being flat. I was always large breasted, since the age of 12. I just could not adjust to having no breasts and a horribly mutilated chest. At the 2 year mark, I decided to have delayed DIEP reconstruction.

DIEP surgery is not for the faint of heart. DIEP is done in at least 2 or more phases. Phase 1 is moving the tissue and blood vessels to the chest and getting them to "take". Phase 2 is tweaking the size and shape, liposuction and fat grafting. Some need more than one phase 2. There are lifting and activity restrictions, drains to deal with, 24/7 girdles, sleeping on your back. It's a marathon, not a sprint.

My new "breasts" are soft and warm. They look and feel natural. I'll never have to replace them or suffer implant complications. They are mine forever. Do they look like my old breasts? No, but then my old breasts were ticking time bombs due to 2 gene mutations, so anything is better than those puppies. Am I totally happy with them? I would say I'm reasonably happy with them. I'm 62 and my breasts look good in clothes. They actually look pretty decent out of clothes, too. I would love to have a little more fat grafting to fluff things up a bit, but I think I'm done with all the surgery.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
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Aug 25, 2019 01:32PM Trishyla wrote:

Mustlovepoodles. Ditto on being satisfied with my DIEP flap reconstruction. I would have preferred to keep my sad, lumpy, droopy breasts,. At least they had feeling. Since that wasn't an option, this is the next best thing. I would never have been happy with implants.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
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Aug 25, 2019 01:51PM ksusan wrote:

I'm happy flat and since what I'd want instead is my actual breasts, flat is the most satisfactory solution for me.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 26, 2019 05:33AM helenlouise wrote:

Hi all,

I had BMX in July 2018 and have been flat since. Initially I just was crop tops but then found Lorna Jane pammy bras which have an insert that give just a little shape.

I had a recurrence on the scar line and required a surgical biopsy April 2019 which is still not healed, sadly, due to radiation (2015 & 2018). I would not have been able to use a breast form in this time and I hate to think what might have happened if I had gone for reconstruction (was never a consideration).

So I am flat and I am ok with my body and my look. I do miss my breast for pleasure and some outfits just don’t work but that’s ok.

I know for some women the shape of breast is important, so do what works for you.

Good wishes to you all xx
Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Aug 26, 2019 08:08AM - edited Aug 26, 2019 08:20AM by alto

I went unilateral mx at age 42. I had been married for a year, so it was a tough decision. My husband thought I'd feel more like me if I had the reconstruction.

But I'd already had 2 surgeries, and I just couldn't take much more of that in my future. I was too tired to consider it. That made me feel a bit like a wimp, that I wasn't willing to fight for the girl, but that was where I was. I wanted to get back to my life and not be dealing with this stuff all the time.

I did not consider surgery involving anywhere else on my body - it felt like too much of a risk for me/my situation. I also didn't love the idea of implants - not the silicone, not the donor tissue they'd have to use to keep them in place, not the ripples I'd have, and the thin skin that might be an issue with direct-to-implant. (All of this was very individual to my situation, but played a role in my decision.) I didn't like all the unknowns I was facing - both in terms of how I would wake up (would they be able to do the implants, or would I wake up with TEs) and how my skin would cooperate. Plus, they kept finding things at my surgeries - so I really didn't feel like I had a clear diagnosis either, and was wary of getting all this work done, and not knowing whether it would have to be undone. . . It just hadn't been going very well for me. And I needed a break.

I've had a C/D, and they've always been a bit of a pain, to be honest. It probably helped me let go - that I had a sort of resentful relationship with them - although I felt bad about that, too. :P Anyway, I had a lumpectomy on the non-mastectomy side, and I knew what a pain it could be to deal with the residual aches (these have gotten better over time). I'm the type to be distracted by that kind of thing. I also just knew I'd be the kind of person to lean over a sharp corner or do something stupid with my numb chest. It felt safer to keep the numb spot closer to my chest and protected. Plus, I'm picky about results and symmetry (waiting for the implant to settle? ugh), and I gain and lose weight pretty regularly.

So I did the unilateral mastectomy without recon. It felt scary to make the decision, but I knew it was the right one, given my options and my feelings.

It took about 6 weeks to regain 80-90% of my mobility and energy, and feel pretty functional on a daily basis. I was taking short walks later that week, could drive week 2 or 3, and by week 4 I could do short shopping trips (if someone else carried the heavy stuff), but it's better to take it easy while you heal. My doc said absolutely no weights until I saw her around week 7, and after that she said, start light and take it very, very easy - start slow. I wore a prosthetic made from pillow stuffing the first couple of months (by week three, I had it stuffed in a pocketed camisole that I tucked into my pants). I eased into a mastectomy bra and lightweight prosthetic around 2 months after surgery (before that at week 7 or so, I could wear it, but I'd get a little sore). Finding the right gear is key - I have an Amoena 1S (shallow top) and 2S (fuller top) that are lighter silicone, and have a very soft silicone liquid back to them, and I forget they are there. I started with a light one by ABC (size 5 / B-ish), and stuffed some pillow stuffing around it as I got better and gained weight - it was a win/win - and probably gave me time to get used to the prosthetic. I've gained some weight post-surgery, so that's why I have two - got a saggy S1 to start (size 6), a fuller S2 once I gained weight back (size 7). I prefer the Amoena to ABC because of the soft/jelly back. I bought them on Amazon for 1/2 what my breast center would have charged for ABC forms.

I used to lift weights before, and I still haven't gotten back into that - but I can do laundry and carry groceries. I do get some twinges when I lift very heavy things or do stuff like turning tight screws to build furniture. In my surgery, they removed my pec fascia, which might make a difference in strength. Now that I'm 7 months out or so, and settled after moving homes, I'm looking at getting back in shape.

Seeing comedian Tig Notaro (BMX/NR) made me feel very differently about going flat - somehow, just that it's someone else's normal made it feel better to me.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/15/2019 Mastectomy: Right
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Aug 26, 2019 11:52AM JCC4958 wrote:

It definitely seems as though you have heard a multitude of pros and cons for going flat. I had a bi-lateral mastextomy in 2013 and have never regretted it. I was; however, in my mid fifties. If I had been younger I may have considered implants. I have not once regretted my decision. It is a little uncomfortable the first few times you go to a doctor or someone inadvertently sees your flat chest and you have to explain it, but that goes away quickly. I do have the prothesis, but they can be very uncomfortable in warm weather. It is kind of like wearing hot water bottles! I do have to say, I find a freedom in not having to wear them if I don't want to.

I had know a lot of women who had issues with reconstructions, some examples you have heard here, and some who had issues with recurrences during the process. No matter what you decide, you will get pros and cons from everyone.

If I had to give you one piece of advise, it would be to do what ever YOU want to do and feel comfortable with. Don't let anyone else talk you into doing anything. You do not have to make a decision now. Most insurance companies will pay for it even years after the mastectomy if you change your mind. You are going through so many emotions and changes right now, making one decision after another....you don't have to rush into this one. Let the dust settle and them decide what you feel comfortable with. Afterall, its not like losing an arm or a leg. Although, if your breasts have always been something that was important to you and your appearance, then you may feel differently. The important thing is.....DO WHAT YOU WANT TO DO. If you don't know....think about it for as long as you need to. You will know when you have made the right decision.

Best of luck to you. Prayers!

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Aug 26, 2019 05:51PM wallycat wrote:

If reconstruction were safe and easy, I would happily have breasts again (maybe not quite as big as I was naturally). But everything I read made me think it isn't easy and it's not always safe. I'm going on 13 years and don't regret my decision.


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Sep 2, 2019 09:57PM WC3 wrote:

Erica:

I accidently said LGAP, I meant SGAP. I know there are men out there who don't care if a woman is flat or not but I think it would significantly limit my future options. Some women actually look pretty good flat. I think women with a "boyish" figure pull it off nicely but I have very wide hips so would look oddly proportioned if I went flat.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 2, 2019 11:31PM Momine wrote:

WC3, I am not sure that recon vs. none makes that big a difference in the man department. As far as hips, I have large hips too, not boyish at all. You can see pictures of me flat in the thread I started on this forum.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)

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